FINALLY!!

Nope, not about the vaccine…you’ll hear me shouting from the rooftops on that one….from whatever state or country you live in! No, I may have a break through in my care….again…not talking cure…there is no cure for leiomyosarcoma or magic pill. However, I have had an uphill battle with my local oncologist, who has been not very fun to deal with. I have been patient….I have been his patient since November 2019. For a person who tends to get along with just about anyone, this man has rubbed me the wrong way from the beginning….not listening to my complaints, not giving me any information on meds and side effects, not checking on other aspects of my life…as how I am doing mentally….just not giving me support in any way. It has been hard to deal with as a former nurse, because I know what good care should look like. During my last visit to the oncologist’s office and my infusion in January, I finally got the courage to sign up for two different zoom meetings through the hospital for cancer patients. I really was feeling that alone that I felt I was ready to participate in these two groups. I sent emails to the social workers who were in charge of each group on their respective fliers. I heard NOTHING back from either one. The class dates came and went with radio silence. I finally mentioned it to Rich this weekend and he was beyond livid. He was ready to move my entire care to another healthcare system within Omaha today. I told him I loved the infusion nurses and I loved the hospital itself. I finally knew my way around to where I needed to be for tests and treatments. I love that they play a lullaby over the loudspeaker in the whole hospital when a baby is born. I love that they have prayers over the intercom system in the mornings. I love that the nurses in the oncology, radiology and infusion centers see me and ask how I am by name. I just have had a few bumps in the road. Rich looked up their patient advocacy line and called them over the weekend. He left a message and my name and number. The director of oncology/infusion centers called me this morning and I told her everything that was going on. She asked if I had talked to my nurse navigator. I told her I have never had one. That I had never spoken to social worker…that my local oncologist doesn’t listen to me and his nurse is too soft-spoken to be my patient advocate. I told her I was not only concerned about my lack of care but of those older patients without a medical background whom are being seen there. She agreed. Someone actually listened to me! I am no longer seeing my local oncologist. I will only see his nurse practitioner (who is new to his practice). Since my sarcoma specialist is calling the shots from the Mayo Clinic, it shouldn’t be an issue to have her be my primary person I see here. My appointment was changed for Wednesday to have her as my primary person to see prior to chemo. I also got a phone call from the social worker at the cancer center. She is sending me more information about groups meeting via zoom and said she would come and talk to me when I was getting my chemo at some point. So yay! I am hoping that I will have a lot more success at least at being informed from now on. This is important to me as I will be changing my treatment starting next month, and I want to be informed about my choices and the effects of those choices. FINALLY!